April 11, 2013

Randy and I drove the kids out to Minnesota last week to visit with the folks from the Program for Hypoplastic Left Heart Syndrome at the Mayo Clinic. I can't remember if I have mentioned it on the blog before. These guys are involved in a few different research projects. They are trying to figure out the cause of HLHS and also how to improve the quality of life for individuals with HLHS. A lot of the stuff they're doing is completely over my head, but what really grabbed our attention is the fact that they are working towards manipulating skin cells-- gathered from a skin sample from your arm-- and turning them into healthy heart tissue. Theoretically this healthy heart tissue would be injected into the heart and somehow replace the bad cells, improving heart function. Pretty amazing stuff. Here are a couple of links about the program:

First, the good news: It was a great experience. Everyone we worked with was extremely kind. We would do it again in a heartbeat. They were able to get from Maren what they needed. It was a long day, but for the most part everyone kept it together. "Keeping it together" is relative with our kids, but Randy and I are calling it a success.

We did leave with a few questions. Dr. O'Leary, the cardiologist working with us, was concerned about a few things with Maren's heart. Before coming, we knew that Maren's heart function is pretty bad. It's not been great for a long time. It never seems to get any worse, but definitely has never really improved. Dr. O'Leary put a number on it for us, which really scared me. Maren's heart is functioning at about 30%-40%. Ouch. He also told us that there seemed to be some significant narrowing around her Norwood. The Norwood was Maren's first surgery. I don't know what they did, but it's some opening that needs to be open and seems to not be as open as it should be, causing her heart to work harder than it would have to otherwise. (My stomach is turning as I write this.) Also, her protein levels are a little below normal. Protein loss, or PLE, can be a complication with post Fontan patients. It's a scary thing that can't be prevented nor cured and it haunts me constantly. Right now she's good, but it's something to watch.

Sigh. So the next step is for the guys at Mayo Clinic to talk to Maren's doctors at U of M about what they found. From there, one of two things will happen. Maren's doctors will tell us that nothing has changed. They knew about her crappy heart function and the narrowing of her Norwood, but because she is doing so well clinically, and has been doing well for a while, they want to leave her alone for the time being. OR they will say, wow, that's news and we better do something about that while she is still healthy.

For the time being, we are happy to stay in our bubble. From what we can see, Maren is doing great. She's so, so happy. She loves going to school. She loves drawing and coloring for her teachers at school and church. She's making progress developmentally-- both physically and mentally. I was just telling Randy the other day how I feel bad because I often have very low expectations of Maren. I don't know if it's my way of subconsciously protecting myself emotionally so I'm not let down when she doesn't meet her milestones. Who knows. Maybe I'm just a jerk. But just over the last month or so, I've really seen a jump in Maren's mental acuity. Her vocabulary is improving, sometimes a little more colorful than I would like, but beggars can't be choosers, right? And even her understanding of concepts. Like just the other day I was peeling hard boiled eggs for dinner. Maren wanted to help but she had just come in from outside and was covered in dirt and mud. While she went to wash her hands I finished the job. When she came back she was upset and said, "But, Mommy! I wanted to hatch the eggs!" She's able to reason much better than she used to-- making timeouts, among other things, much more meaningful and productive.

The point is, Maren is the same little girl she was a month ago. She is a walking miracle. We will continue to take things a day at a time, focus on the abundance of good, and soak up every second we have with her. The same is true with Henry and Emmy. Gosh, being a mom is great! I have my moments, but when it comes down to it, this is really the most amazing job ever. I love my kids so very much and I am so very grateful that they are mine and Randy's forever.

As part of the study, Randy, Henry, and I also had echocardiograms done. While we were waiting for Dr. O'Leary to come in and explain our results, Henry and Randy slipped out to have their labs drawn. Soon after, the doctor came in. He began by telling me that Randy and Henry's echoes were completely normal. They both had normal, healthy hearts. I king of braced myself and with a nervous laugh asked, "But...?" Apparently I have a funky heart, too. Yay! Obviously, it's not bad. I don't even remember what he called and I'm not going to try and restate how he explained it to me, but I'm fine. He told me that I could live my whole life with my heart the way it is and have no symptoms. However it is something to keep an eye on. If it gets worse, there may be some issues. When I get the results in the mail I'll post the name of it for my reference.

Like I said, it was a great experience :) Maren's not scheduled to go back in to see her cardiologist until sometime in July, but I plan on following up with U of M as soon as they get a chance to look over Maren's stuff. I'll make sure and update then.

If this reaches any HLHS families out there who are interested in participating in the study, make sure to check out the links posted at the top. It really is an incredible opportunity to make a difference in the lives of families down the road and maybe even yours. Feel free to contact me as well.